Martyn Butler, a transformative figure in the fight against HIV and AIDS, passed away on 21 February 2026 at the age of 71. As a co-founder of the Terrence Higgins Trust in 1982, Butler played a pivotal role in establishing the UK’s foremost charity dedicated to HIV support and education. His commitment to advocating for the LGBTQ+ community and combating stigma left an indelible mark on public health.
A Legacy Born from Loss
The inception of the Terrence Higgins Trust was tragically inspired by the death of Butler’s friend, Terry Higgins, in July 1982. Higgins was one of the first individuals in the UK known to have succumbed to an AIDS-related illness, and his untimely passing propelled Butler and Rupert Whitaker, Higgins’ partner, into action. They recognised an urgent need for community-driven support and information amidst a burgeoning health crisis.
The charity’s early days were characterised by grassroots efforts, fundraising, and community engagement. With the help of friends and local venues, Butler and Whitaker sought to raise critical funds for medical research while simultaneously addressing immediate community needs. Their work was not only about financial support; it was about creating a safe space for those affected by the disease.
Educating and Empowering the Community
In 1983, the Terrence Higgins Trust joined forces with the London Lesbian and Gay Switchboard and the Gay Medical Association to organise the UK’s first AIDS conference at Conway Hall in London. This landmark event brought together key figures in the LGBTQ+ community, including Mel Rosen from Gay Men’s Health Crisis, to discuss strategies for combating the disease.
Butler’s impassioned speeches and the trust’s initiatives were essential in disseminating information about HIV/AIDS, which was scarce at the time. The trust aimed to educate the community, provide support services, and advocate for better healthcare responses from the NHS. They also sought to alleviate the burden on hospices that were beginning to feel the strain of an increasing number of patients.
Despite the challenges posed by a hostile political climate, the trust became a beacon of hope. It offered reliable information and compassionate care in an era rife with misinformation and stigma. The support from the LGBTQ+ community was overwhelming, resulting in significant fundraising efforts that enabled the trust to thrive.
Overcoming Stigma and Continuing the Fight
Butler’s legacy is also marked by his resilience in the face of societal stigma. The Conservative government under Margaret Thatcher was hesitant to fund the trust, viewing it as a project primarily run by gay rights activists. This reluctance was compounded by the Local Government Act of 1988, which sought to inhibit discussions about homosexuality in educational settings.
Nevertheless, the Terrence Higgins Trust persevered, providing vital services, including counselling and hardship grants, to those living with HIV. In 2025 alone, the charity’s helpline, THT Direct, responded to nearly 13,000 calls and distributed 30,000 HIV test kits. The trust has since adapted to meet the evolving needs of the community, with a goal to end HIV transmission in the UK by 2030.
Butler demonstrated remarkable humility throughout his journey. He initially hosted meetings in his London flat and used his personal phone number as the trust’s first helpline. His commitment to the cause was personal; he recorded the funerals of friends lost to AIDS, including his own boyfriend, who passed away at just 22.
An Enduring Influence
Born in Newport, South Wales, Butler faced significant challenges early in life, including deafness due to congenital nerve damage. Despite a difficult school experience, he moved to London in the 1970s and found work in advertising and as a cinema technician. It was in London that he met Terry Higgins, forging a connection that would ultimately shape his life’s work.
Over the years, Butler received numerous accolades for his contributions to HIV/AIDS advocacy, including being appointed an OBE in 2022 and receiving a Rainbow Honours lifetime achievement award. Even after stepping back from his laser lightshow business, he continued to serve in an advisory capacity for the trust, remaining an influential voice in the fight against HIV.
He is survived by his mother, brothers Guy and Andrew, and sister Jacqueline. His spirit and dedication will continue to inspire those who strive for equality and understanding in the ongoing battle against HIV/AIDS.
Why it Matters
Martyn Butler’s life and work are a testament to the power of grassroots activism in the face of overwhelming adversity. His efforts not only transformed the landscape of HIV support in the UK but also challenged societal norms around sexuality, health, and community. As we reflect on his legacy, it is essential to remember that the fight against HIV/AIDS is far from over. Butler’s story serves as a rallying cry for ongoing advocacy, education, and compassion in a world still grappling with the echoes of stigma and misunderstanding.
